#48822     09-12-2007 06:39 PM      |       Joined:  Sep 2007  Posts: 11    Member   |      OP      Member    Joined:  Sep 2007  Posts: 11  |    My husband is now 20 days out of radiation and is worried his taste may never come back.  Anyone know of a case where it didn't?  I haven't heard of one yet.      |      |       |                      
#48823     09-12-2007 06:45 PM      |       Joined:  Nov 2002  Posts: 3,552    Patient Advocate (old timer, 2000 posts)   |           Patient Advocate (old timer, 2000 posts)    Joined:  Nov 2002  Posts: 3,552  |    I have heard of people whose taste didn't come back or was altered but they seem to be the exception.  It took a full year for me and it happened gradually over time with salt being the first and sweets being the last.  You have to be patient. I didn't even start to turn the corner for 30-45 days post Tx.        
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#48824     09-12-2007 07:10 PM      |       Joined:  Sep 2007  Posts: 11    Member   |      OP      Member    Joined:  Sep 2007  Posts: 11  |    So, when did you get a first hint of the return?      |      |       |                      
#48825     09-12-2007 07:15 PM      |       Joined:  Sep 2007  Posts: 11    Member   |      OP      Member    Joined:  Sep 2007  Posts: 11  |    Sorry,  I replied to your reply before seeing the whole message.  Joe had about 60cGy and no chemo. His tomur had previously been completely removed from parotid salivary gland.  Do you think the amount of radiation makes any difference?      |      |       |                      
#48826     09-12-2007 10:41 PM      |       Joined:  Jul 2007  Posts: 45    Contributing Member (25+ posts)   |           Contributing Member (25+ posts)    Joined:  Jul 2007  Posts: 45  |    Hi, For me my taste didn't start to return until about 60days or so post R/T. & it's still improving all the time 9 months out!        
Undifferentiated Nasopharyngeal Ca. T3N1M0 stage: IIb. diagnosed: June 2006. 6cycles of high dose chemo (Cisplatin & 5FU). 6 & half weeks (33sessions) radical R/T
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#48827     09-13-2007 08:34 AM      |       Joined:  Aug 2007  Posts: 32    Contributing Member (25+ posts)   |           Contributing Member (25+ posts)    Joined:  Aug 2007  Posts: 32  |    I'm about 6 months out of radiation, and taste has not fully returned, but has gotten better.
  I never did loose the salt taste, but sweet taste became very weak. The first bit of something would be sweet and then the taste would fade. It still does but has improved a good bit.
  At first, anything sour would burn my tongue, even tomato sauce. I've been taking zinc supplements and I think they had helped my tongue to settle down and not burn. But the research on zinc seems very mixed.
  I'm sure the degree of taste loss depends on how much radiation and exactly where on the tongue. My oncologist was very vague on what improvement I could expect.        
Stage III BOT, 14 weeks chemotherapy, 7 weeks IMRT. Finished treatment Jan. 2007.
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#48828     09-13-2007 10:23 AM      |       Joined:  Dec 2003  Posts: 528    "OCF Down Under" "Above & Beyond" Member (500+ posts)   |           "OCF Down Under" "Above & Beyond" Member (500+ posts)    Joined:  Dec 2003  Posts: 528  |    Hello 4 years out and my taste has not returned although has improved - I have a very dry mouth also. My tongue still burns from 'strong' tastes even apple juice which I have to dilute (actually I prefer plain water). On the whole sweet is good although some sweet fruits taste bitter to me eg cherries. Sending best wishes for your husbands recovery Love and light from Helen        
RHTonsil SCC Stage IV tx completed May 03
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#48829     09-13-2007 12:15 PM      |       Joined:  Aug 2006  Posts: 294    Gold Member (200+ posts)   |           Gold Member (200+ posts)    Joined:  Aug 2006  Posts: 294  |    Ron,
  It sounds as though you had the same doc as me.  I tried to pin my radiation doc on loss of taste and when will recover but I could tell he didn't want to have to answer.  The best I could ever get out of him was that "on average" it takes 2 to 10 months post Tx for the tastebuds to return.  He still qualified this by saying that even in "some cases" full taste may never return for certain taste sensations.  He stressed that every case was different and that there was no blanket answer to that question.  I am now 14 months post Tx and taste is perhaps 75% back to normal.  I still cannot tolerate the taste of chocolate or most other desserts and most bread products taste sweet.  I was never much of a beer drinker but it is terrible now as it tastes like it is full of sugar.
  Bill D.        
Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
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#48830     09-14-2007 02:21 AM      |       Joined:  Sep 2002  Posts: 642    "Above & Beyond" Member (500+ posts)   |           "Above & Beyond" Member (500+ posts)    Joined:  Sep 2002  Posts: 642  |    Ron, I am five years out, and after a couple of years I began to enjoy the taste of almost all of the foods that I have always liked. Soft drinks taste like syrup and candy is too chewy, but I can taste and enjoy steaks, Mexican food, pizza, desserts...really everything that is not too spicy. So even though I have the dry mouth, I really enjoy the taste of good food. Yesterday I went to one of my favorite funky hamburger and fries joints...a local favorite where even Bush Sr. and Lyle Lovett eat, and it was great.
  So keep the faith...it really can get better. Once the taste returns, the desire to eat greatly increases and makes it worth the effort.
  Take care, Danny G.        
Stage IV Base of Tongue SCC Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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#48831     09-14-2007 04:56 AM      |       Joined:  Mar 2006  Posts: 114    Senior Member (100+ posts)   |           Senior Member (100+ posts)    Joined:  Mar 2006  Posts: 114  |    I'm more than a year out from original treatment and sweets still don't taste good to me.  Nothing tastes what I would call 'normal' still, but things like salty foods...meats, cheese, etc do taste decent.  As you can see from the replies there is a wide range of recovery.  -steve J.        
Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.  
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